Faces  of  Spina  Bifida   Lieven  Bauwens   Secretary  General  IF   Member  of  Food  For=fica=on  Ini=a=ve  EMT     Minbuza  lunchseminar  –  17  December  2015  

International Federation for Spina Bifida and Hydrocephalus

Spina Bifida

Hydrocephalus

A life

Preconception

Preven2on   Right  to  life  

DATA  

Access to health care

Life-long follow-up

Right  to  Care   Registration at birth

Registry

Of  course  also:   Right  to  be  with  the  mother   Right  to  an  iden2ty   ….  

Of  course  also:   Right  to  educa2on   Right  to  work   Right  to  independent  living   …  

Data

Lack of data

<=1.0   2.1-­‐3.0  

1.1-­‐2.0   >  3.0  

Rates  per  1000  births:  data  from   March  of  Dimes  

Focus on surveillance Data  drives  efforts  in  preven2on   Data  drives  efforts  in  care  provision  

Ignoring NTDs is not prevention NTDs  

Other health outcomes: Certainly: FA deficiency and related anemia Probably: stroke Possibly: Low birth weight, pre-term birth, cancer, other birth defects, … Recurrence?

Overlaid data of Daly et al 1995 and Crider et al 2014

Prevention Prevention of NTDs by taking Folic Acid (to 70%) }  (maybe) higher rate of prevention with other Bvitamins }  Recommendation: daily intake of 0.4 mg of folic acid } 

} 

} 

at least two months prior to the conception and the first months of pregnancy

Parents at extra risk should take daily 4 mg

Termina=on  is  not  preven=on  

…  20  years  in  Europe  …    

IF  Supports  For=fica=on  

Consensus  for  For=fica=on  

Role  of  SB  associa=ons   •  Understanding  the  issue   –  NTD  registra2on   –  Food  and  nutri2on  intake  

•  Understanding  the  local  situa2on   •  Build  and  be  part  of  a  Na2onal  For2fica2on   Alliance   •  Advocacy   •  Monitoring  of  the  ac2ons  undertaken  by   government  

Perception

Role  of  SB  associa=ons  

THANK  YOU.